1. The illness I live with is: Myalgic Encephalomyelitis a.k.a Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia Syndrome, and EDS Type 3
2. I was diagnosed with it in the year: I was diagnosed with ME/CFS in April or May of 2011 and POTS in November of 2011 and EDS in June of 2012
3. But I had symptoms since: August 2010
4. The biggest adjustment I’ve had to make is: I feel like school has been the biggest adjustment for me… it really put me off track. I was in a lot of advanced courses when I got sick when I was in 11th grade… I was in English Honors, Advanced Trig, French 3, etc…
5. Most people assume: that I don’t try hard enough. That I’m just making excuses…
6. The hardest part about mornings are: waking up. Forcing myself to shove tons of pills down my throat.
7. My favorite medical TV show is: I don’t watch a lot of TV but I do like Grey’s Anatomy (I know it’s more of a drama but yeah.)
8. A gadget I couldn’t live without is: my iPhone.
9. The hardest part about nights are: getting to sleep.
10. Each day I take __ pills & vitamins. I don’t know probably 15+
11. Regarding alternative treatments I: have tried a lot of different things. I’ve tried chiropractors… I’ve tried weird laser therapies, I’ve tried infra-red blah blah blah. Right now the only “alternative” thing I’m doing is supplements but that’s becoming more mainstream as time goes on. Plus I think they do help.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. I decide who knows and even though it sucks to “look fine”, I like that I can go on about my business without people pestering me.
13. Regarding working and career: I have a part time job right now with ProHealth. They are an awesome company and I get to help other people with CFS or Fibro and it’s really an incredible opportunity. I’m so thankful to have this job. I get to set my hours and everything. I work really hard though.
14. People would be surprised to know: that I was an allstar softball athlete before I got sick.
15. The hardest thing to accept about my new reality has been: somewhat missing out on normal college life. I only take one class on campus… I don’t live on campus, I commute. I feel a little left out of the fun.
16. Something I never thought I could do with my illness that I did was: At one point, I built up my endurance and strength to the point where I tried out for my high school’s softball team again and I did it… and I was the starting pitcher for them. Until I started crashing. I’m still really proud of that though. Plus it gives me the opportunity to tell any jerk of a doctor that I tried conditioning and exercising to get better and it worked for a short amount of time before I relapsed and became so freaking sick I could barely move. So exercise didn’t cure me.
17. The commercials about my illness: Non-existent.
18. Something I really miss doing since I was diagnosed is: taking long walks outside… spending the whole entire day out with my friends and having the best time without getting tired or overheated.
19. It was really hard to have to give up: softball… ): I know I keep repeating it and I talk about it pretty much all the time when I reminisce about my past but it meant so much to me. It was my way of getting away from everything and I knew I was good. I had so much confidence when I was on the field. I felt invincible when I played.
20. A new hobby I have taken up since my diagnosis is: blogging, I play guitar more often, experimenting with make-up, etc.
21. If I could have one day of feeling normal again I would: that is such a good question. Maybe pitch one more game of softball… just one more game.
22. My illness has taught me: Not to take things for granted. Also not to let this illness get in the way of my dreams.
23. Want to know a secret? One thing people say that gets under my skin is: “you know, if you improved your diet you’d start to feel a lot better.”
24. But I love it when people: tell me that it’s going to be okay. That I’m a strong person.
25. My favorite motto, scripture, quote that gets me through tough times is: "You never know how strong you are until being strong is the only choice you have."
26. When someone is diagnosed I’d like to tell them: It’s not going to be an easy journey, but I am here for you. There’s a huge community of people that are here for you that will support you through your hardships and your successes.
27. Something that has surprised me about living with an illness is: I’ve really gotten to know myself as a person better.
28. The nicest thing someone did for me when I wasn’t feeling well was: send me a message telling me that they know how I feel.
29. I’m involved with Invisible Illness Week because: I love being involved in anything regarding CFS/ME. I really do hope that one day we will find a cure for this horrible disease so all the people ridiculed by their doctors, family and friends can finally feel validated!
30. The fact that you read this list makes me feel: flattered. (:
I’m so brain foggy today god help meeeeeee.
So everyone! I have a lot to update you all on! I made the trip up from Georgia to stay in South Jersey with my Grandma so I could go see Dr. Levine in New York City. Today I went and saw her and it could not have gone better!
She looked through my previous blood work and noted that my Epstein Barr virus titers were high. My HHV 6 levels are also high. So we discussed what lead to my diagnosis, you know all that general info and then we talked about treatments! She wrote me scripts for low dose Naltrexone, Valcyte, supplemental IV’s, and I forgot the last thing. Haha.
But anyway, I knew the EBV was an issue but I didn’t really know too much about the HHV 6 until I looked it up! Apparently…
HHV-6 can persist in the brain tissue long after primary infection and after evidence of the virus has long disappeared from the plasma in the circulating blood. Therefore, direct evidence of chronic infection is not easily attainable by standard laboratory tests. In other words, even though there is no DNA for HHV-6 (or other herpesviruses such as EBV) in the plasma, it is possible that one of more of these viruses are in fact smoldering in the tissues and throwing off inflammatory cytokines.
So I thought that was interesting!
Oh and I got a photo with Dr. Levine because I’m weird like that. She’s awesome though, and if you have CFS/ME and have the chance to see her, I’d definitely recommend her. She knows her stuff.
Excuse how incredibly flushed and puffy my face is. Also no makeup, because who wears makeup to the doctor? Yeah.
Anyway, that’s how that all went. I’ll keep everyone up to date on how I do on the valcyte, naltrexone, and the nutritional IV’s!